Please read and respond.. please

Specific Illnesses & Conditions VM/MAV
1

Ok I will try and make this easy by giving a quick synopsis and then some multiple choice answers for you to choose from…

*Quick overview: For those who haven’t read this before, my name is Selena, I’m 19, I’ve been experiencing chronic daily dysequilibrium with sensory integration difficulties since shortly after my 17th birthday. I’ve had MRI’s etc to rule out any organic abnormality, vestibular testing to rule out vestibular dysfunction.
*
ANYWAY- here is the situation at hand

I am on 10 mg lexapro, 1 mg klonopin as my standard meds… I’m currently working with topamax, if my life was a science experiment the topamax would be the variable.

Back in April, my doctor wanted me to try nortryptyline- I went off all meds to “cleanse my system” (stupid, stupid idea) and took the 3 hour car trip back to school. When I got out of the car, the rocking motion of the car continued, almost how Mal De Embarquement patients describe their discomfort, my theory is that my brain was weakened by depleted serotonin levels and then the car ride activated something within the motion sensors of my brain. This is when my doctor put me on klonopin- I couldn’t get out of bed and was miserable- plus I had classes I needed to go to! The klonopin significantly helped, I know it’s the band-aid drug, but it allows me to function!

NOW lets skip to this past week, August- I am doing really, really poorly, I can’t walk without a cane, I have to go back to school in two weeks!!! I am so discouraged and so desperate and I don’t know what set this off, to set the record straight, I am NEVER symptom free, but there are levels of functioning for me- and this is very very minimal- I compiled a list of possible reasons and I would really really love some feedback (or some original thoughts)

HERE ARE THE POSSIBLE REASONS I BRAINSTORMED:

A) I’m becoming immune to klonopin, I never actually felt any better, my CNS was just sedated

B) The topamax is making me worse, someway somehow, although I’ve never heard of that happening to anyone, (I always hear topamax either does nothing and makes you foggy or helps)

C) Serotonin backlash- I’m 19, in most other parts of the world besides North America they don’t prescribe people antidepressants until they’re in their early to mid twenties.

D) Occasional pot smoking- my parents are getting a divorce, I can’t walk, no one I know can relate and in summation- I’m depressed. A year ago I swore off all alcohol, cigarettes, drugs, artificial sweetners, MSG-- but I guess recently I’ve just needed something to take the edge off.

Thats all I can think of, so the question is WHY AM I FEELING WORSE?

2

— Begin quote from “dizzzyupthegirl”

D) Occasional pot smoking- my parents are getting a divorce, I can’t walk, no one I know can relate and in summation- I’m depressed.

Thats all I can think of, so the question is WHY AM I FEELING WORSE?

— End quote

My guess would be the stress levels caused by your parents divorce. From what I understand from other forums, the marijuana “may” actually help as long as it isn’t in large amounts or all day long.

Don’t feel so bad, I take night classes, and I am currently on crutches from my surgery. I am hoping to be down to a cane by the time classes start. To top it off, the college I attend is on the top of the tallest hill in the city I live in. I understand your concern.

One other thing, I usually go through a bad spell every winter. It’s almost funny when I fall at class becuase the school I go to is primarily nursing, and they go into a panic when they see me go down. :mrgreen:

Brian

3

I’ve heard of many people who had to go off topamax because it either made them extremely dizzy or made the dizziness worse. It is a common side effect of that drug. Maybe you could try weaning yourself off the topamax (with your Dr.'s advice of course) and see if it makes a difference in how you’re feeling. Ask if you can try a different migraine med. I am hearing good things about verapamil. I haven’t tried anything yet because for the time being I am doing okay, but when I get to the point again that I was at before, I want to try that one.
God, that really sucks that you have this and have to go back to school. Do what you can to feel better but just be safe about it. 8)

4

— Begin quote from ____

When I got out of the car, the rocking motion of the car continued, almost how Mal De Embarquement patients describe their discomfort, my theory is that my brain was weakened by depleted serotonin levels and then the car ride activated something within the motion sensors of my brain.

— End quote

you may be right - if it got much worse after travel, why does it have to be after plane travel, or boat travel, why not car travel?

— Begin quote from ____

I’m becoming immune to klonopin, I never actually felt any better, my CNS was just sedated

— End quote

so you think you’re suffering some tolerance withdrawal from Klonopin? My first thought is that you would be experiencing anxiety and panic, shakiness, stuff like that, and worsening of your dizzies. But, if i were to cut back on my K, i would feel a worsening of my dizzies, so maybe you’re right. If you say you never thought it helped, try cutting back a dose, just once, like, cut a pill in half, or wait a little bit before taking one of your doses to see what happens. see if things get worse, just to see if it’s even doing anything at all. If i’m an hour late on a dose of K i can tell.

— Begin quote from ____

Serotonin backlash- I’m 19, in most other parts of the world besides North America they don’t prescribe people antidepressants until they’re in their early to mid twenties.

— End quote

One of the reasons that they don’t prescribe SSRIs, aside from Prozac, for those under 19 is because of noncompliance. And the reason Prozac is approved is because of it’s long half-life. if they miss a dose of Prozac it doesn’t make any difference. The other issue is suicide in young people. So i’m not sure what you mean by serotonin backlash.

— Begin quote from ____

Occasional pot smoking- my parents are getting a divorce, I can’t walk, no one I know can relate and in summation- I’m depressed. A year ago I swore off all alcohol, cigarettes, drugs, artificial sweetners, MSG-- but I guess recently I’ve just needed something to take the edge off.

— End quote

your parents are getting divorced My husband is a psychologist and he says that **nothing ** will throw a kid off kilter than a divorce, and with more far-reaching effects. How long has this been going on?

Julie

5

Selena,

I’ll respond to the things I have experience with and leave the rest to others.

— Begin quote from “dizzzyupthegirl”

The topamax is making me worse, someway somehow, although I’ve never heard of that happening to anyone, (I always hear topamax either does nothing and makes you foggy or helps)

— End quote

Topamax made me worse. I tried it for two months. I knew I felt worse, but since the side effects were the same as my migraine symptoms, I couldn’t tell which was which. I stupidly quit taking it cold turkey because I felt better after each missed dose starting with the very first. I feel much better without the Topamax. I’ll never take it again! Please don’t follow my example and quit cold turkey because it can put you at risk of seizures. I didn’t have any problems, but I consider myself lucky. If you decide to try stopping the Topamax, talk to your doctor first.

— Begin quote from “dizzzyupthegirl”

my parents are getting a divorce, I can’t walk, no one I know can relate and in summation- I’m depressed.

— End quote

Stress definitely makes things worse. I try to use relaxation techniques when I’m feeling extra stress. It’s no cure all, but it definitely helps. I know depression quite well. I think you should consider talking to your doctor about trying another antidepressant. Also, if you’re not already, get into counseling. Even just a few sessions should make you feel better and help you to cope.

I truly feel for you Serena. I have a younger sister your age who is going through a lot right now too. She’s dealing with the death of our father, a recent diagnosis of PTSD and bipolar disorder, and trying to go to college and build her future. The experiences you and she are going through are tough for anyone, but they are especially difficult for young people like you who are trying to become independent and figure out what you want to do with your life.

Good luck. I’ll be thinking of you and hoping you find some relief soon.

Marci

6

Dear Selena.
Everyone seems to have covered most of the bases already!
A child of divorce, I know that feeling only too well.
Not a nice place to be.
Divorce, is ugly and the children suffer!

Also for you, to have to be having this illness at 19 years old, being forced to use a cane!
us oldies, don’t like it , I can imagine how you feel at 19 for god sake!!! :twisted:
That truly breaks my heart.

how long have you been trying the topamax??
at first i had really better symptoms , but then thing became worse with each titration, after getting over the hump and sticking it out , I’m feeling better again!
I’m at 75mg now and stable,(holding) for a while.
It takes some people 3 months before topa kicks inot full benefit!!!
and from what I was told by 2 **very clever **people it starts to repair the brain damage caused by migriane and other neurological issue’s , not damage it.
maybe your body is starting to become tollerant to the klonopin , and it needs more to do the same job it used to.
I’ve heard of this happening.
I’m not sure, I’m just thinking out aloud here.
I’m sorry darling, I do hope you get some answers very soon.
all my love
jen

7

This is really a little OT except for the young person thing. My young niece had to take off an entire year from college due to MAV. She went to see Hain but got stuck with his assistant. Hain takes no new patients in the clinic.

He prescribed her Neurontin. She turned into a zombie. He prescribed her Effexor but **did not **titrate her 1/3 capsule at a time and my sister, of course, would not listen to me and take it as per Hain. What is it about family that they won’t listen to you? With one 37.5 capsule she turned into a depressed zombie.

Anyway, she quit going to Hain’s assistant and went to a psychiatrist who prescribed her Celexa, for her migraines, her dizziness, her depression and anxiety. Within a day or two she is without symptoms - completely. Full of life. Celexa ! Who would have thought. Actually this post may belong on the thread talking about MARD because that entire family is full of panic.

P.S. I had a full bottle of Celexa in my bathroom a year ago when my husband was pushing the psychosomatic approach on me. I wouldn’t take it. I eventually threw it away. I wonder…

8

**thanks for all the support & suggestions **

:slight_smile: Selena